Finally up in Montpelier, VT as the family continues to file in to Thierry & Julie's. It was a beautiful drive up with a nice long stop in Hartford, VT to snow shoe around the property and brainstorm a little retreat house for when Mom can finally put this all behind her.
And speaking of behinds, I suppose hers was getting jealous because a UTI wasn't enough, now she's got a whopping hemorrhoid. Way to add insult to injury!
Her night last night was sleepless as well, so tonight she will take her ativan nice and early in hopes that it will take effect when she's ready to fall asleep, not at 5am!
Thinking of all our family far and near that can't be here!
Sunday, December 30, 2007
Time to Ring it In
I'm headed up North, so I may not post daily this weekend, but please be sure that I'll be in daily communication with my Mom as always, and if any changes happen, the world wide web will be the first to know!
The past two days have been par for the course. She's mostly frustrated by the lack of sleep at night. The ativan seemed to wind her up more than calm her down two nights ago in particular, but I've encouraged her to not worry about night and day so much right now, and catch cat naps where she can. We'll get the whole sun up sun down issue sorted out later!
She continues to eat small tiny meals heavy in protein, but needs to drink more water. Her electrolytes have been well within normal limits every time she has her blood drawn, so things like gatorade aren't necessarily the best choice (fortunately she's not a fan of the stuff to begin with, but this is my educational insert for the day). It's good if you've been actively throwing up or had profuse diarrhea and can't keep any food down, but otherwise it can fill you up with empty calories, especially when someone has a very little appetite to begin with. She needs real food, and good ole' fashioned water.
The house will be quiet this weekend, and fill back up after the New Year, so I'm hoping she can take these few days to enjoy the lull in visitors and catch up on some sleep.
Have a safe and happy holiday weekend, and here's to a HEALTHY New Year!
The past two days have been par for the course. She's mostly frustrated by the lack of sleep at night. The ativan seemed to wind her up more than calm her down two nights ago in particular, but I've encouraged her to not worry about night and day so much right now, and catch cat naps where she can. We'll get the whole sun up sun down issue sorted out later!
She continues to eat small tiny meals heavy in protein, but needs to drink more water. Her electrolytes have been well within normal limits every time she has her blood drawn, so things like gatorade aren't necessarily the best choice (fortunately she's not a fan of the stuff to begin with, but this is my educational insert for the day). It's good if you've been actively throwing up or had profuse diarrhea and can't keep any food down, but otherwise it can fill you up with empty calories, especially when someone has a very little appetite to begin with. She needs real food, and good ole' fashioned water.
The house will be quiet this weekend, and fill back up after the New Year, so I'm hoping she can take these few days to enjoy the lull in visitors and catch up on some sleep.
Have a safe and happy holiday weekend, and here's to a HEALTHY New Year!
Friday, December 28, 2007
Will the Real Elisabeth Talbot Please Stand Up?
Because this has GOT to be a joke. Mom has a UTI? Are you KIDDING ME? It's no joke, she called her nurse at the cancer center, and turns out her urine cultures grew some little buggies, and she gets to add another lovely antibiotic to her regime. The good news is (cause we're glass half full gals), now we know where the back pain was coming from.
I had to share this bit from an email I received from Coco today, because apparently there's a family joke circulating about how the house is having "sympathy symptoms." She loses a kidney, and one of the two water pumps fails. Why does the house have two water pumps? Who knows? Probably the same guy who knows why she has two ureters on the left side. A backup in case one fails? Well clearly, that plan didn't work out so well.
At any rate, today she was balancing plenty of rest and sleep with doing some laundry and helping Papa sort out some medications. He was pleasantly surprised when she just called the pharmacy, described the pill in question, and they were able to tell her what it was. I share this in case others didn't know you could do this. Any pharmaceutical website will do the same.
In the meantime, I'd like to reiterate what Coco said in her comment about holding off on phone calls and visits right now. We all know how much Mom wants to get back in to the swing of things, and it is taking all her willpower to force herself to rest.
Next week we should get a start date for chemotherapy, and then all you Helping Hands who've been chomping at the bit will surely get your chance to chip in. Once the holidays are over and the house empties a bit, we'll be calling in the reinforcements!
I had to share this bit from an email I received from Coco today, because apparently there's a family joke circulating about how the house is having "sympathy symptoms." She loses a kidney, and one of the two water pumps fails. Why does the house have two water pumps? Who knows? Probably the same guy who knows why she has two ureters on the left side. A backup in case one fails? Well clearly, that plan didn't work out so well.
At any rate, today she was balancing plenty of rest and sleep with doing some laundry and helping Papa sort out some medications. He was pleasantly surprised when she just called the pharmacy, described the pill in question, and they were able to tell her what it was. I share this in case others didn't know you could do this. Any pharmaceutical website will do the same.
In the meantime, I'd like to reiterate what Coco said in her comment about holding off on phone calls and visits right now. We all know how much Mom wants to get back in to the swing of things, and it is taking all her willpower to force herself to rest.
Next week we should get a start date for chemotherapy, and then all you Helping Hands who've been chomping at the bit will surely get your chance to chip in. Once the holidays are over and the house empties a bit, we'll be calling in the reinforcements!
Baby Steps
Well, we're not back in the hospital yet, so that's a good sign! Mom's having a few new symptoms that are a nuisance, and it's hard to know if she's just hypersensitive to every little thing her body feels, or if they're significant of something else. As my mother puts it, she's never been so focused on just what's happening between the tip of her head and her baby toe as she is now, so sometimes it's hard to know what to make of certain feelings. For example, she's having back pain. Is it her left kidney flaring up? Or is it the price she's paying for three nights in an uncomfortable hospital bed? She feels short of breath sometimes, even at rest. Does she have an infection or atelectasis, or is it because she literally, has been sitting around for four weeks?
She's going to call Super Nurse Judy this morning just to check in and let her know about her progress and these new symptoms. We'll have to see what she says.
Otherwise, she continues to nibble on some food about every hour to keep in some good calories and stimulate her non-existent appetite. Last night she had some of Tommy's Shepperd's Pie, a bite of salad, and a bit of bread. Baby steps, I keep telling her.
She's going to call Super Nurse Judy this morning just to check in and let her know about her progress and these new symptoms. We'll have to see what she says.
Otherwise, she continues to nibble on some food about every hour to keep in some good calories and stimulate her non-existent appetite. Last night she had some of Tommy's Shepperd's Pie, a bite of salad, and a bit of bread. Baby steps, I keep telling her.
Thursday, December 27, 2007
We Have Lift Off!
Mom was visited by her oncology and urology team mid-morning, and both agreed that she can go home this afternoon. She is trending in the right direction: she doesn't have diarrhea every time she urinates, her stool is more formed, she hasn't needed any nausea or pain medication, and she tolerated a small breakfast of coffee, eggs, and toast without difficulty. She was actually up and bathed by 6am today! Think she was trying to send them a message?
She is no longer on the flagyl, but will remain on vancomycin for several weeks. Other than the vanco, her blood pressure medication is the only other thing she'll have to take on a daily basis. How great is that? Of course, we have all sorts of anti-nausea and pain meds stock-piled at home, but hopefully it'll stay that way.
Knock on wood.
I am off to pick up some supplies for the annual Guerlain-with-a-handful-of-Stancioffs-and-a-dash-of-Delavigne New Year's Gathering in Montpelier, VT. In honor of my mother, who never travels to this event without one, I will buy and bring my very own dobie pad. Every time I wash a dish (and there will be many dishes to wash), I will think, "This one's for you, Mom."
Wednesday, December 26, 2007
Meatloaf Schmeatloaf, I Hate Meatloaf
That's not true. I actually love meatloaf, especially my Mom's, but considering the season, I had to give a little tribute to Randy, the little brother in A Christmas Story.
What made me think of Meatloaf, you might ask? Tonight Mom's tray arrived and there was no runny eggs or processed apple sauce in sight, just a plate full of meatloaf, mashed potatoes, green beans, and PEARS! Of all things! She was so excited, that she got out of bed to sit up in a chair, pulled the table up to her lap and started crying. She told me she then prayed that everyone was able to enjoy a meal like this tonight. Shortly before dinner, she received well over a dozen emails through the hospital's system, and she said to me that there's no way she can't beat this, she feels so loved and supported.
Although she's never lost her positive edge, she has her fair share of down moments, but tonight she sounded happy, energetic, and with a little sparkle in her voice.
Fortunately, she took it very easy on the dinner and only ate about a quarter of her plate, but I reckon that's the most she's eaten in about four weeks!
Mom and I keep talking about how her struggle thus far has really brought out the true colors in those around us, and I thank my lucky stars for our friends and family, because just when I think I'm slipping, they're right there to pick me up again.
What made me think of Meatloaf, you might ask? Tonight Mom's tray arrived and there was no runny eggs or processed apple sauce in sight, just a plate full of meatloaf, mashed potatoes, green beans, and PEARS! Of all things! She was so excited, that she got out of bed to sit up in a chair, pulled the table up to her lap and started crying. She told me she then prayed that everyone was able to enjoy a meal like this tonight. Shortly before dinner, she received well over a dozen emails through the hospital's system, and she said to me that there's no way she can't beat this, she feels so loved and supported.
Although she's never lost her positive edge, she has her fair share of down moments, but tonight she sounded happy, energetic, and with a little sparkle in her voice.
Fortunately, she took it very easy on the dinner and only ate about a quarter of her plate, but I reckon that's the most she's eaten in about four weeks!
Mom and I keep talking about how her struggle thus far has really brought out the true colors in those around us, and I thank my lucky stars for our friends and family, because just when I think I'm slipping, they're right there to pick me up again.
"Thank God for Small Gifts"
That's what Mom said to me this evening when she found out she didn't have to have a colonoscopy this year (she's due in 2008). Talk about looking at the glass half full!
She had a better day, complete with a visit from Didi and Gwennie. Less nausea, pain, and diarrhea, and she's even being allowed some soft solids for dinner. Apple sauce and eggs- a dinner fit for a queen.
She asked me to give her some info on Ativan, which is her new best friend. When most of us think of Ativan, we think of anxiety disorders, but it's also excellent for insomnia and nausea, especially in chemo patients. I'm so relieved that her symptoms have finally been managed well, and to know that Ativan might continue to be a good medication as we commence our dance with chemo.
I've been shopping the internet for log cabin ideas, and every time I see one with a big porch I imagine our family sitting in rocking chairs, sipping cocoa, laughing and saying, "Remember when Mom had cancer? Ahhhhh...that was sooo long ago!" Maybe Gwennie will even have a driver's license by then. Oh, the horror.
And Coco- Mom's sorry she hasn't called you back yet :) She will soon!
She had a better day, complete with a visit from Didi and Gwennie. Less nausea, pain, and diarrhea, and she's even being allowed some soft solids for dinner. Apple sauce and eggs- a dinner fit for a queen.
She asked me to give her some info on Ativan, which is her new best friend. When most of us think of Ativan, we think of anxiety disorders, but it's also excellent for insomnia and nausea, especially in chemo patients. I'm so relieved that her symptoms have finally been managed well, and to know that Ativan might continue to be a good medication as we commence our dance with chemo.
I've been shopping the internet for log cabin ideas, and every time I see one with a big porch I imagine our family sitting in rocking chairs, sipping cocoa, laughing and saying, "Remember when Mom had cancer? Ahhhhh...that was sooo long ago!" Maybe Gwennie will even have a driver's license by then. Oh, the horror.
And Coco- Mom's sorry she hasn't called you back yet :) She will soon!
Grungy & Grody
This is how Mom says she feels today. She's up to the bedside commode all the time, tethered to the IV, and all she wants is a shower! I reminded her that she can unplug that IV from the wall any time and go for a walk, and that if she just asks to be disconnected from the IV for about a half hour, she should be able to take a shower. These are the little things nurses can overlook, but make such a world of difference to a patient. It's easy to forget that your patient might be there long after your twelve hour shift has ended. So hopefully a shower will bring her a little extra sunshine today.
She continues to be on a clear liquid diet until the diarrhea resolves, which she hasn't been tolerating very well. Yesterday she only got down a cup of broth and some water. Her urologist, Dr. K, was by to visit this morning and he always takes a bit of extra time with Mom after the rest of the team has left. He explained that this recovery from colitis might be slow-going, but that they're doing the best they can.
Understandably, she's frustrated. Who isn't? All these problems unrelated to her surgery, and she hasn't even begun chemo yet? Hopefully that will seem like a cake walk compared to all of this.
Since she's back at St. Frannie, feel free to send her a little email through their system. She really enjoyed those last time.
She continues to be on a clear liquid diet until the diarrhea resolves, which she hasn't been tolerating very well. Yesterday she only got down a cup of broth and some water. Her urologist, Dr. K, was by to visit this morning and he always takes a bit of extra time with Mom after the rest of the team has left. He explained that this recovery from colitis might be slow-going, but that they're doing the best they can.
Understandably, she's frustrated. Who isn't? All these problems unrelated to her surgery, and she hasn't even begun chemo yet? Hopefully that will seem like a cake walk compared to all of this.
Since she's back at St. Frannie, feel free to send her a little email through their system. She really enjoyed those last time.
Tuesday, December 25, 2007
Sayonara C.Diff!
The good news is that Mom's c.diff seems to have resolved, although she will have to remain on the flagyl for some time, and she'll always be flagged as having the infection when she's admitted to the hospital, but so be it. At least we're making some progress.
The bad news is that Mom's colitis is extensive, and she will have to remain in the hospital for a few days and receive heavy doses of vancomycin. It's a broad-spectrum antibiotic that is great for treating nasty infections, but resistance can occur with this drug if not monitored and administered carefully. Patients on "vanc" often have to have peak and trough levels measured from carefully timed blood draws, and compliance (ie taking the drug as directed at home) is very important to prevent resistance as well.
Family visited throughout the day in shifts, and Gwennie delivered a few Christmas presents so Mom wouldn't feel as if she totally missed out. I've got to say, despite having her wisdom teeth pulled just a few days ago, that little lady has turned out to be quite the Mini Martha. I think she could have a great career in nursing :)
I hope everyone had a wonderful holiday!
The bad news is that Mom's colitis is extensive, and she will have to remain in the hospital for a few days and receive heavy doses of vancomycin. It's a broad-spectrum antibiotic that is great for treating nasty infections, but resistance can occur with this drug if not monitored and administered carefully. Patients on "vanc" often have to have peak and trough levels measured from carefully timed blood draws, and compliance (ie taking the drug as directed at home) is very important to prevent resistance as well.
Family visited throughout the day in shifts, and Gwennie delivered a few Christmas presents so Mom wouldn't feel as if she totally missed out. I've got to say, despite having her wisdom teeth pulled just a few days ago, that little lady has turned out to be quite the Mini Martha. I think she could have a great career in nursing :)
I hope everyone had a wonderful holiday!
Santa, Can We Take a Rain Check?
Mom's spending Christmas at St. Frannie's, but don't worry, she got the best Christmas present any of us could have given her since she's been there- no nausea or vomiting, and the BEST night's sleep in four weeks.
We brought her in to the Cancer Clinic yesterday morning around 10am because she had continued to struggle with the nausea, vomiting, and diarrhea. She felt and looked toxic, and even said to me, "I feel like I'm on the edge." Now anyone who knows my mother knows that she is no baby when it comes to feeling sick, so when she said that to me, I called her nurse and Judy confirmed that Mom should be seen. Didi and I wrapped her up in a cozy blanket, and in about an hour from leaving the house, Mom was asleep on a stretcher and receiving IV fluids next to a huge window, bathing in sunlight. Didi and I on the other hand, discovered the patient kitchen stocked with sandwiches, jello, apple sauce, every Polar beverage you could possibly imagine, and good ole' fashioned Lorna Doones. And the staff was decked out in holiday gear, and pleasant and attentive as always.
Long day short, we ended up going to the ER where Mom could be seen by a few other teams, including surgery, and have some pictures of her abdomen taken. Surgery (dinks) said she could go home, but the ER doc (so not a dink) and her oncologist (love at first sight), said they'd rather her have a CT scan with contrast and stay overnight. Contrast meaning mom had to somehow slug back three massive glasses of this kool-aid business and hold it in for two hours so they could see the colon best on the scan. She threw up right before Didi and I left, so I wasn't so sure that was going to go as planned, but wouldn't you know that the all-star got down two of those cocktails? Amazing...
After the CT scan, she was admitted to the oncology floor, which got me psyched, because mean-oncology-nurse is an oxymoron. We spoke before she went to sleep, and when she called at 7am today, she said she'd got the best night's sleep in weeks (thank you Ativan) and had no nausea (thank you compazine). The CT scan shows significant colitis (col=colon, itis=inflammation), which is due to the unrelenting little S#!* of an infection, c.diff. This explains the persistent nausea and diarrhea, and is nothing to be taken lightly. I think she thought that by showing how well she felt she could get sent home today, but her oncologist (love at first sight) made it a point to reiterate how serious of a condition this was for someone going in to chemo so soon. She'll have to be on more serious antibiotics in addition to what she's already on, and hopefully that will solve the problem. There's also a good chance that she will stay in the hospital for a few days getting lots of fluids, and making sure she can keep down ample foods and that the diarrhea resolves.
So yeah, it stinks that she's in on Christmas, but if she's comfortable, that's certainly the most important thing!
We brought her in to the Cancer Clinic yesterday morning around 10am because she had continued to struggle with the nausea, vomiting, and diarrhea. She felt and looked toxic, and even said to me, "I feel like I'm on the edge." Now anyone who knows my mother knows that she is no baby when it comes to feeling sick, so when she said that to me, I called her nurse and Judy confirmed that Mom should be seen. Didi and I wrapped her up in a cozy blanket, and in about an hour from leaving the house, Mom was asleep on a stretcher and receiving IV fluids next to a huge window, bathing in sunlight. Didi and I on the other hand, discovered the patient kitchen stocked with sandwiches, jello, apple sauce, every Polar beverage you could possibly imagine, and good ole' fashioned Lorna Doones. And the staff was decked out in holiday gear, and pleasant and attentive as always.
Long day short, we ended up going to the ER where Mom could be seen by a few other teams, including surgery, and have some pictures of her abdomen taken. Surgery (dinks) said she could go home, but the ER doc (so not a dink) and her oncologist (love at first sight), said they'd rather her have a CT scan with contrast and stay overnight. Contrast meaning mom had to somehow slug back three massive glasses of this kool-aid business and hold it in for two hours so they could see the colon best on the scan. She threw up right before Didi and I left, so I wasn't so sure that was going to go as planned, but wouldn't you know that the all-star got down two of those cocktails? Amazing...
After the CT scan, she was admitted to the oncology floor, which got me psyched, because mean-oncology-nurse is an oxymoron. We spoke before she went to sleep, and when she called at 7am today, she said she'd got the best night's sleep in weeks (thank you Ativan) and had no nausea (thank you compazine). The CT scan shows significant colitis (col=colon, itis=inflammation), which is due to the unrelenting little S#!* of an infection, c.diff. This explains the persistent nausea and diarrhea, and is nothing to be taken lightly. I think she thought that by showing how well she felt she could get sent home today, but her oncologist (love at first sight) made it a point to reiterate how serious of a condition this was for someone going in to chemo so soon. She'll have to be on more serious antibiotics in addition to what she's already on, and hopefully that will solve the problem. There's also a good chance that she will stay in the hospital for a few days getting lots of fluids, and making sure she can keep down ample foods and that the diarrhea resolves.
So yeah, it stinks that she's in on Christmas, but if she's comfortable, that's certainly the most important thing!
Saturday, December 22, 2007
Unless You All Want to Chip in and Buy Us Another Fridge
I never thought I would ever have to say this, but we have too much food! There are many bodies in the house, and still we're swimming in leftovers as it is. Would it be rude to request that people save their cooking energy until we request more? Mom eats VERY little, and we can only pack in so much, especially in the sweets department (which we have to hide in crafty little nooks to keep my grandfather from finding them).
I had these grand plans for delicious dinners all weekend, instead we will feast on all the delicious treats we've been so fortunate to receive. In the meantime, feed yourselves and your families, and when we're needing reinforcements, we'll be sure to call in the troops!
Mom is quiet today, needing rest and quiet, but she did have an entire pear this morning, a few bites of scrambled eggs, and some toast. Calories are going in, slowly but surely.
Friday, December 21, 2007
You Got Questions? I got Answers!
Maybe that will be the title of my column, but I'd really want to get across a New Jersey accent some how in there.
Susan Eastman, Helping Hands coordinator extraordinaire, asked me to clarify how often exactly Mom will be receiving chemotherapy. She will only receive it one day a week for several hours. For example, if her treatments are on Mondays, she will receive an infusion of one drug, then the following Monday she will receive an infusion of two drugs, then the following Monday (week 3) she will have off from any chemo in an effort to let the drugs take their course and for her to rest. These three weeks complete a cycle, and she will do six cycles total.
So like...three times six is like...mental math, mental math....18 weeks. Mid May, we'll have a "Get Lost Chemo" party, providing she is able to stay on track. Things that could get her off track would be if she absolutely does not tolerate treatment at all and therefore loses too much weight, inability to maintain safe blood cell counts, etc. But that won't happen!
I plan on sticking around for the first treatment or two, and Didi will be here as well, but we'll certainly need folks to help bring Mom to her treatments and/or stay with her for a bit after each treatment. This all depends on how she tolerates it, but these are just seeds to plant in our Helping Hands' crew's brains.
"Is it T-e-e-t or T-e-a-t?"
Just in case readers don't quite understand the mild level of insanity that has clouded over this house hold, we finished off the evening with a game of boggle which quickly turned in to a sharing of funny contraceptive stories among three generations.
Not entirely sure why I felt the need to share this little detail, but I think that there are certain moments that have made us each laugh so hard our sides hurt, and it is how this tremendous team manages to keep afloat. Even if it means sacrificing a little dignity for a good laugh...
What would we do without family and friends?
Oh yes, and this little ditty also caused some serious abdominal cramping as well- warning: contains lots of "colorful" language.
What's Age Got to Do, Got to Do With It?
Yes, Tante Didi has been singing that song all week, not realizing that the lyrics are in fact, "what's LOVE got to do, got to do with it." It's opened the pathway for a decent amount of teasing, but fortunately she can dish it right back. Still, we can't give her too much grief, because she volunteered to drive Mom's stool sample to the hospital this morning. Gold star.
Mom had a great morning but felt worse as the day progressed. She ate a one-egg omelet and 3/4 piece of toast for breakfast, some of Marilyn's chicken soup for lunch, hot cocoa, some avocado, and a few bites of delicious chicken, rice, with vegetables for dinner. Although on the food front she continues to improve, her stomach is now giving her a ton of grief, but we keep assuring her that this is because things are moving along now and she's introducing more food each day. Better a belly ache than left-sided flank pain, that's for sure! It also seems that we've gotten a good handle on preventing nausea before eating or taking meds. Phew! Because no one hates to boot more than mi madre!
She spent the better part of the afternoon in bed, and had a few quick visits from people who stopped by to drop off yet more delicious goodies. We have more food than we know what to do with, but the rest of the household has tried to do their duty in keeping the fridge from overflowing- it's a tough job, but some one's got to do it.
The other little patient of the household has been showing us all up. You would never know Gwennie had her wisdom teeth removed this morning if it weren't for the massive cheeks (which unfortunately, us Talbot girls already have to begin with). She barely skipped a beat!
Many cheers and thanks to the Howe ladies who provided this packed house with a most delicious feast, packed in disposable foil pans no less. They though of everything! There wouldn't be any left overs either, had we not hid the rest from my grandfather. Oh and the pears! THE PEARS! Fragrant, perfectly ripe, and delicious. Mom wasn't up to eating any tonight, but she is looking very forward to one for breakfast. Big hugs for all the treats.
Thursday, December 20, 2007
Chicken Soup for the Soul
My sincerest apologies for not blogging these past two days, but please be assured that if I don't post, all is well and we are just busy keeping Mom comfortable and happy!
Gwennie and I arrived Wednesday afternoon at 4pm, and Mom was nothing but smiles to see Gwennie. Tuesday had been a good day in that she was feeling a bit more energetic, but overall, Wednesday was a bit slower and less comfortable of a day.
I stayed with her Wednesday night and made sure we were all over her meds and way ahead of her symptoms. I think it may have even worked!
We woke up this morning and headed to St. Frannie's to meet mom's oncologist, Dr. D., who was absolutely wonderful. She spent about 2 and a half hours with us, getting a thorough history, going over the pathology reports, and explaining our options for future treatment.
She explained to us that a very good chunk of tissue surrounding the tumor was removed, including muscle and fat. When the tumor was examined under the microscope, it was found to be very aggressive transitional cell cancer, with squamous differentiation. These terms will mean nothing to most people, but the take home message is that the cancer was very aggressive, unusually so for where it is. According to what Dr. D. interpreted, the border from where the tissues were removed were clean of cancer cells, however because of the aggressive nature of what was removed, they have reason to be concerned that some microscopic cells could still remain in her body.
She will begin chemotherapy after the New Year. She will receive one drug (carboplatin/Paraplatin) on week 1, then a combo of the first drug and another (gamcitabine/Gemzar) on week 2, then week 3 she gets off. These three weeks count as one full cycle, and she will complete 6 cycles in total. Side effects include, but are not limited to nausea, vomiting, hair loss, anemia (low red blood cell count), low white blood cell count (increased risk for infection), risk of bruising and bleeding from low platelet count, fatigue, constipation (tell me about it), and lots of other pleasantries. Everyone responds differently to chemotherapy, so there is no telling how Mom will tolerate all of this, but we will just have to wait and see. I feel so blessed that my boss has essentially let me off the hook until I begin my new job March 19th, which means I can be with mom for her first three cycles.
We also met Judy, our nurse. She works with Dr. D., and will be mom's primary oncology nurse, and get this, we have a number to her direct line. HALLELUJAH! It's a shame that one has to develop cancer to get this sort of consistency in care and attentiveness, but what can you do? Judy really spent time with us discussing our concerns surrounding Mom's persistent nausea and lack of bowel movement for eight days. The trouble is that everything she takes to relieve pain and nausea is HUGELY constipating. The other major concern is that mom probably consumes 500 calories a day, if that. She just can't take more of one or two bites of anything. So Judy suggested some Ensure or Boost, which are high calorie supplement drinks, and really pushing Mom to eat bland, easily digested food when the nausea is at bay. She even asked to keep mom for 3 hours so she could give her some IV fluid, so I went and brought Gwennie to her pre-op appointment, and by the time we were done, we picked up mom who had slept the entire time, and was snacking on saltines when we walked in.
It is such a beautiful thing, to know that these two women are really going to invest in my Mom's care from a holistic point of view, and will see her on a very consistent basis. Puts my mind at such ease...
We finally arrived home at 5pm to find Lynn and Ivan stopping by for a quick hug on their way to Greenwich, and we were all here to applaud Mom's first bowel movement in eight days. It's incredible how we take these small things for granted. We'll bring a sample in tomorrow to see if the c.diff has finally cleared, because if Mom could stop taking the Flagyl which is the only effective treatment, she would start feeling a lot better.
Now she's watching Friends with Gwennie, and just ate half a mug of chicken soup from Marilyn, which she said is the best tasting thing she's had since her surgery. So way to be Marilyn!
We've all be enjoying the delicious deliveries too, especially some brownies from our family friend Judy, which have to be enjoyed in the office/Tante Didi's room because Papa's not allowed to partake. We're so scandalous!
My college girlfriends also sent a blood orange tree from William Sonoma today- I mean seriously- the shower of generosity and thoughtfulness has been overwhelming, so a huge thank you to everything you all have been up to!
Monday, December 17, 2007
Things on the Home Front
Mom has been home since about 4pm. It took a while for her to be discharged because she kept throwing up, thanks to a double dose of narcotics. The nurse's thought process was to give her the highest dose ordered so it would get to her faster? Not quite sure I think people like that should be practicing...but it's done and over with, and she's no longer hallucinating or vomiting. Bonus.
I talked to her about an hour ago, and she was in the midst of her first real pain attack since being home. She'd taken her anti-nausea a half hour before the narcotic, and hopefully is resting comfortably now. I really try to hold back on how many times I call the house to check it, but it's hard not to. I just have to assume that no news means they're getting along just fine without me!
Oh yes- and before Mom was discharged, she was delivered a staggering 25 email messages through the St. Francis web page! She couldn't believe it! They made her so happy. Now you just have to harness that creative energy and post comments on the blog here, but this is all she's up to reading these days. Thank you so much to everyone who wrote one :)
I talked to her about an hour ago, and she was in the midst of her first real pain attack since being home. She'd taken her anti-nausea a half hour before the narcotic, and hopefully is resting comfortably now. I really try to hold back on how many times I call the house to check it, but it's hard not to. I just have to assume that no news means they're getting along just fine without me!
Oh yes- and before Mom was discharged, she was delivered a staggering 25 email messages through the St. Francis web page! She couldn't believe it! They made her so happy. Now you just have to harness that creative energy and post comments on the blog here, but this is all she's up to reading these days. Thank you so much to everyone who wrote one :)
Hot Diggity Dawg
Mom's ultrasound showed that her left kidney looks in excellent shape, and she will be discharged early this afternoon. Dr. K is going to make sure she's got all the prescriptions under the sun that she could possibly need, and we will once again begin the adventures of healing at home.
Didi should be arriving at the hospital soon, if she's not already there, with pen and paper in hand to take notes on all the discharge instructions they're given. Two sets of ears are always better than one. She has put up with way more than she bargained for. The plumber was there fixing all sorts of problems, then the power went out just as he was leaving, she was washing all the sheets, and baking a quiche for lunch! I called when she was looking for extra sheets for the beds and was pretty horrified when I told her we only had one set of sheets per bed :) Guess this will teach us to keep a few extra sets on hand from now on. I will pack a few from my house (because, yes, I am a linen junkie).
Stephanie is busy anticipating Papa's arrival by organizing his medical records so he can be seen by Mom's cardiologist and primary care doctor this week.
Oh yes, and the house needs a new water pump. You can't even make this stuff up!
When I need some comic relief, I self-medicate with Billy Connelly. He is hilarious, and this skit is particularly appropriate given the wide variety of potty talk that's been going on...
Didi should be arriving at the hospital soon, if she's not already there, with pen and paper in hand to take notes on all the discharge instructions they're given. Two sets of ears are always better than one. She has put up with way more than she bargained for. The plumber was there fixing all sorts of problems, then the power went out just as he was leaving, she was washing all the sheets, and baking a quiche for lunch! I called when she was looking for extra sheets for the beds and was pretty horrified when I told her we only had one set of sheets per bed :) Guess this will teach us to keep a few extra sets on hand from now on. I will pack a few from my house (because, yes, I am a linen junkie).
Stephanie is busy anticipating Papa's arrival by organizing his medical records so he can be seen by Mom's cardiologist and primary care doctor this week.
Oh yes, and the house needs a new water pump. You can't even make this stuff up!
When I need some comic relief, I self-medicate with Billy Connelly. He is hilarious, and this skit is particularly appropriate given the wide variety of potty talk that's been going on...
Monday, Monday, La La La La La La
Remember that song?
My creative genes are running dry these days- you'll have to forgive me. I've just been looking forward to it being Monday because that means Mom's regular team would be back in the hospital.
Dr. K was in to see Mom bright and early. He really took some time to talk through all of her concerns, and reassured her that he is not worried about her, and what she is going through is not serious, which came as a huge relief to her. She's been in and out of the hospital so many times for so many things, and no one ever gives you a sense of how "bad it is," so you just worry worry worry.
Right now, it is all about symptom management. Hydronephrosis can be incredibly painful, so much so that it creates nausea and anxiety, so Mom's symptoms are very classic. C-diff can also cause some nausea, which can take up to two weeks of antibiotic therapy to get rid of, unfortunately the flagyl is a massive pill that just perpetuates the nausea, but there's no other choice. So if all looks well on the ultrasound this morning, meaning that her hydronephrosis has resolved since the stent was placed, or is near being resolved, they will send her home.
The main goal now is going to be getting a good symptom management plan in place to keep mom on track, and prevent another painful attack. She needs to drink a ton of water, start eating at least some bland foods, and make sure she gets adequate anti-nausea meds before taking any other pills. Might sound pretty easy, but I assure you that symptom management is one of the biggest challenges in nursing, and Tante Didi and Stephanie will have their work cut out for them.
Having a few days to myself in Boston before heading back to CT has made me realize the importance of taking breaks from the care-giver role. I hope I can provide some relief to Didi when I arrive so she can rest and maybe even see her wonderful little grandbabies in NH.
Will let you know how the ultrasound goes!
My creative genes are running dry these days- you'll have to forgive me. I've just been looking forward to it being Monday because that means Mom's regular team would be back in the hospital.
Dr. K was in to see Mom bright and early. He really took some time to talk through all of her concerns, and reassured her that he is not worried about her, and what she is going through is not serious, which came as a huge relief to her. She's been in and out of the hospital so many times for so many things, and no one ever gives you a sense of how "bad it is," so you just worry worry worry.
Right now, it is all about symptom management. Hydronephrosis can be incredibly painful, so much so that it creates nausea and anxiety, so Mom's symptoms are very classic. C-diff can also cause some nausea, which can take up to two weeks of antibiotic therapy to get rid of, unfortunately the flagyl is a massive pill that just perpetuates the nausea, but there's no other choice. So if all looks well on the ultrasound this morning, meaning that her hydronephrosis has resolved since the stent was placed, or is near being resolved, they will send her home.
The main goal now is going to be getting a good symptom management plan in place to keep mom on track, and prevent another painful attack. She needs to drink a ton of water, start eating at least some bland foods, and make sure she gets adequate anti-nausea meds before taking any other pills. Might sound pretty easy, but I assure you that symptom management is one of the biggest challenges in nursing, and Tante Didi and Stephanie will have their work cut out for them.
Having a few days to myself in Boston before heading back to CT has made me realize the importance of taking breaks from the care-giver role. I hope I can provide some relief to Didi when I arrive so she can rest and maybe even see her wonderful little grandbabies in NH.
Will let you know how the ultrasound goes!
Sunday, December 16, 2007
Thank Goodness for J.Lo's Movie Career
I spoke to mom around 5pm and she was so nauseated that she couldn't talk on the phone, so I just called back and she was resting a bit more comfortably, happily entertained by Monster-In-Law starring J.Lo and Jane Fonda.
Tomorrow morning she'll have her ultrasound done and we'll get a better impression of how the kidney looks. She was told that if everything seems okay, she'll be discharged, which makes neither of us terribly comfortable. My hope is that the team will do a bit more investigating in to how the kidney is doing and rule out any more problems, rather than just sending her home because things "seem to be okay again."
Papa is planning on visiting Mom on his way to Avon tomorrow and she can't WAIT to see him.
I'll post as soon as we've got the ultrasound results back!
Tomorrow morning she'll have her ultrasound done and we'll get a better impression of how the kidney looks. She was told that if everything seems okay, she'll be discharged, which makes neither of us terribly comfortable. My hope is that the team will do a bit more investigating in to how the kidney is doing and rule out any more problems, rather than just sending her home because things "seem to be okay again."
Papa is planning on visiting Mom on his way to Avon tomorrow and she can't WAIT to see him.
I'll post as soon as we've got the ultrasound results back!
Slow & Steady Wins the Race
Mom gave me a ring this afternoon and she's feeling a bit under the weather again. She's having a hard time with the pain and nausea, as always. One of the doctors on her team stopped by and said they are going to hold off on the catheter insertion until they do an ultrasound tomorrow morning. This will hopefully give an idea of how inflammed her kidney and ureters are before they do anything else.
They're not in a rush to do the procedure today because although she is in pain, her creatinine levels are normal indicating good kidney function.
Her doctor really reinforced that her recovery will consist of good days and bad days, and now that things have been complicated with the stent placement, she may have some residual pain there.
They're going to do everything in their power to rule out any serious left kidney complications, but if everything checks out okay, they may or may not insert the catheter, then send her home. I think the most important thing now will be staying ahead of her symptoms.
She's very tired though, and asked for no phone calls this afternoon or evening. What she has enjoyed though, is the few emails she's received through the hospital's web page, which get printed out and delivered to her room daily. To send her a message, go to their Email A Patient page.
They're not in a rush to do the procedure today because although she is in pain, her creatinine levels are normal indicating good kidney function.
Her doctor really reinforced that her recovery will consist of good days and bad days, and now that things have been complicated with the stent placement, she may have some residual pain there.
They're going to do everything in their power to rule out any serious left kidney complications, but if everything checks out okay, they may or may not insert the catheter, then send her home. I think the most important thing now will be staying ahead of her symptoms.
She's very tired though, and asked for no phone calls this afternoon or evening. What she has enjoyed though, is the few emails she's received through the hospital's web page, which get printed out and delivered to her room daily. To send her a message, go to their Email A Patient page.
It's a New Day
Yesterday was pretty miserable. It was the first time since my mom's gotten sick that I really just crumbled and had a good, long, sob. The idea of her going back in to the hospital, without my being there for a second time was pulling at my every heart string, and I can't even express how many times I was about to get in the car and drive there. I held back though, because I know in order to take the best care of my mom, I need to take care of myself as well, and once she was at the hospital there was nothing I could do for her that they staff couldn't and more. So we're sticking to the plan and I will be there Wednesday after picking up Gwennie in VT.
I talked to her for almost an hour just now, and she sounds like a new woman. In a single room(thanks c-diff!), slept well, got pain meds 20 minutes before they were due all night long thanks to her SUPER nurse, and is watching the snow fall out her window as we speak. She's feeling so comfortable now, that she actually refused her pain meds at 6am just to see where her threshold is right now- but don't worry, she knows not to let it go if the pain returns, but she also can't be depending on narcotics as heavily as she has been.
The plan for today, providing they can get an interventional radiologist to the hospital, is to place a catheter into the kidney through her back. The issue that has come up is that one part of her kidney is draining just fine, and the other is still congested (which raised the creatinine levels). When I tell people she has two ureters from her left kidney, they ask, "why don't they just cut one out?" That's not an option because both ureters are essential in that they drain two different parts of the kidney. As of now, she has a stent in the "good" ureter to dilate it further and make sure it's draining well. The other ureter they couldn't even find when they went in to place the stent. Dr. G said her bladder looked like a war zone from all the biopsies and surgeries, that they had a hard time finding the occluded ureter. This external catheter will bypass the need to access that ureter for now, drain the kidney, provide some relief, and then hopefully they'll be able to get in there with a stent when everything is less swollen.
She's happy with this plan, and she's happy to be at the hospital. She feels safe, and knows she has access to everything she could possibly need there. It doesn't hurt that when she arrived, she recognized half of the faces and a few staff popped their heads in to say hi. Yesterday she couldn't wait to get out of UCONN and just get home, but now she realizes that she needs to be in the hospital. Personally, I think she's happiest to get away from the stinky detergent they used on the linens at UCONN. I'm glad these are the things she focuses on when we talk- makes me realize she's still, very much herself!
The doctors will call me this morning after they see her, and as soon as I know something I'll post.
Oh yeah- she told me that she developed a career plan for me when she couldn't sleep at UCONN two nights ago. She's going to make me the new Rachel Ray, an Ann Landers of nursing, and she and Tom are going to manage my staff and "all of the fan mail." I'll be marketed as the little pediatric nurse from Boston, who's married, has a cat name Chloe, and nursed her mom through cancer, blah blah blah. She said, "Well, if Dr. Phil can do it!"
Then I remembered, my high school superlative was most likely to become a talk show host....
Maybe. Just maybe.
I talked to her for almost an hour just now, and she sounds like a new woman. In a single room(thanks c-diff!), slept well, got pain meds 20 minutes before they were due all night long thanks to her SUPER nurse, and is watching the snow fall out her window as we speak. She's feeling so comfortable now, that she actually refused her pain meds at 6am just to see where her threshold is right now- but don't worry, she knows not to let it go if the pain returns, but she also can't be depending on narcotics as heavily as she has been.
The plan for today, providing they can get an interventional radiologist to the hospital, is to place a catheter into the kidney through her back. The issue that has come up is that one part of her kidney is draining just fine, and the other is still congested (which raised the creatinine levels). When I tell people she has two ureters from her left kidney, they ask, "why don't they just cut one out?" That's not an option because both ureters are essential in that they drain two different parts of the kidney. As of now, she has a stent in the "good" ureter to dilate it further and make sure it's draining well. The other ureter they couldn't even find when they went in to place the stent. Dr. G said her bladder looked like a war zone from all the biopsies and surgeries, that they had a hard time finding the occluded ureter. This external catheter will bypass the need to access that ureter for now, drain the kidney, provide some relief, and then hopefully they'll be able to get in there with a stent when everything is less swollen.
She's happy with this plan, and she's happy to be at the hospital. She feels safe, and knows she has access to everything she could possibly need there. It doesn't hurt that when she arrived, she recognized half of the faces and a few staff popped their heads in to say hi. Yesterday she couldn't wait to get out of UCONN and just get home, but now she realizes that she needs to be in the hospital. Personally, I think she's happiest to get away from the stinky detergent they used on the linens at UCONN. I'm glad these are the things she focuses on when we talk- makes me realize she's still, very much herself!
The doctors will call me this morning after they see her, and as soon as I know something I'll post.
Oh yeah- she told me that she developed a career plan for me when she couldn't sleep at UCONN two nights ago. She's going to make me the new Rachel Ray, an Ann Landers of nursing, and she and Tom are going to manage my staff and "all of the fan mail." I'll be marketed as the little pediatric nurse from Boston, who's married, has a cat name Chloe, and nursed her mom through cancer, blah blah blah. She said, "Well, if Dr. Phil can do it!"
Then I remembered, my high school superlative was most likely to become a talk show host....
Maybe. Just maybe.
Saturday, December 15, 2007
UGH!
Mom went back to St. Frannie this evening after the Compazine failed to relieve her flu-like symptoms. The left-sided flank pain returned again as well with the same feelings of shortness of breath and being so miserable that she thought she was going to die right then and there.
I don't have anything to report other than her creatinine level is slightly elevated, but not nearly as much as it was two nights ago, she is producing urine, but is in immense pain and remains very nauseated. There is no definite plan for the night other than to keep her comfortable until the team can reevaluate her tomorrow morning.
Stephanie arrived this evening only to be thrown right in the midst of it all, but I appreciate her keeping me promptly up to date and jumping in head first to advocate for my mom.
So tonight I will try to wait out the storm before heading to Connecticut to check on Mom. Please keep the good thoughts and prayers coming!
I don't have anything to report other than her creatinine level is slightly elevated, but not nearly as much as it was two nights ago, she is producing urine, but is in immense pain and remains very nauseated. There is no definite plan for the night other than to keep her comfortable until the team can reevaluate her tomorrow morning.
Stephanie arrived this evening only to be thrown right in the midst of it all, but I appreciate her keeping me promptly up to date and jumping in head first to advocate for my mom.
So tonight I will try to wait out the storm before heading to Connecticut to check on Mom. Please keep the good thoughts and prayers coming!
Go Go Gadget Compazine
Mom's had a rough day since returning home. She can't seem to get past the nausea, despite the prescription for Zofran she was sent home with. Her pain continues to be a problem, and she's worried that it will get worse because she was told to begin weaning herself off the narcotics sooner rather than later, and take Tylenol instead. Mom describes it as having the flu- she's nauseated, has no interest in drinking or eating, and just feels toxic.
She's been resting quietly for about an hour now, but with her hand on her left side, which makes Tante Didi and I suspect that she's still having some localized pain there.
We called the doctor on call, who ordered some Compazine suppositories that should take care of the discomfort and nausea. But if it doesn't work, it's back to the hospital we go!
Papa and Natalie are spending the night elsewhere, because they don't want to overwhelm my mom, which was an excellent call on Tante Didi's part. Mom's other sister, Stephanie, arrives in Hartford tonight and will take over Papa's care when he arrives in Avon.
So it's been a long day. I just keep hoping that mom will start feeling better soon!
She's been resting quietly for about an hour now, but with her hand on her left side, which makes Tante Didi and I suspect that she's still having some localized pain there.
We called the doctor on call, who ordered some Compazine suppositories that should take care of the discomfort and nausea. But if it doesn't work, it's back to the hospital we go!
Papa and Natalie are spending the night elsewhere, because they don't want to overwhelm my mom, which was an excellent call on Tante Didi's part. Mom's other sister, Stephanie, arrives in Hartford tonight and will take over Papa's care when he arrives in Avon.
So it's been a long day. I just keep hoping that mom will start feeling better soon!
She's Going Home!!!
I talked to mom at 7:45am and she hadn't slept well, despite an ambian and being in a single. Who can blame her though- she's got a lot on her mind! I told her to try and give me a ring before she had the procedure done, but she just called and Dr. G said she's going home instead. She continues to amaze him because her creatinine levels are almost back down to normal, which means her kidney is out of danger and doing its job. As of now, no catheter into the kidney is necessary as previously planned, but she will go home with her foley catheter in to the bladder and follow up on Monday to check the creatinine and remove the foley.
Perhaps the stent just needed a bit longer to kick in and drain the entire kidney sufficiently, I'm not sure exactly, but what I am sure of is Mom is SUPER pumped to get home because her father (Papa) and sister (Natalie) are arriving in Avon this afternoon from Maine. Papa suffered a little stroke before Thanksgiving, but has been doing so well in physical therapy and has almost no residual deficits. He's living in Avon for a bit before going to Florida. There he will be followed closely by PT, a cardiologist, and will hopefully get permission to drive again- he called the prospect of not driving again "a death sentence." He's always had difficulty expressing himself, can't you tell?
So the two little patients will be at home with their respective family members responding to their beck and call, and each with a visiting nurse as well. Then I arrive home Wednesday with Gwennie to be her nurse since she's having the old wisdom teeth yanked Friday.
Now...who wouldn't want to be a fly on the wall at our house this Christmas?
I have a perma smile today :)
Now if only someone at home would answer their phone and come pick her up!
Perhaps the stent just needed a bit longer to kick in and drain the entire kidney sufficiently, I'm not sure exactly, but what I am sure of is Mom is SUPER pumped to get home because her father (Papa) and sister (Natalie) are arriving in Avon this afternoon from Maine. Papa suffered a little stroke before Thanksgiving, but has been doing so well in physical therapy and has almost no residual deficits. He's living in Avon for a bit before going to Florida. There he will be followed closely by PT, a cardiologist, and will hopefully get permission to drive again- he called the prospect of not driving again "a death sentence." He's always had difficulty expressing himself, can't you tell?
So the two little patients will be at home with their respective family members responding to their beck and call, and each with a visiting nurse as well. Then I arrive home Wednesday with Gwennie to be her nurse since she's having the old wisdom teeth yanked Friday.
Now...who wouldn't want to be a fly on the wall at our house this Christmas?
I have a perma smile today :)
Now if only someone at home would answer their phone and come pick her up!
Friday, December 14, 2007
Talk About a Day of Highs and Lows
Thank you Coco, for that informative comment on my part. Since I was not able to blog today, I asked Coco to fill everyone in on Mom's progress. She went in to surgery just as I was filing in to my graduation ceremony. I arrived with a beautiful corsage on one wrist from Tante Coco, a charm bracelet from my dear late Aunt Wendy on the other, and my mom in my heart. And of course, Tom and Coco in the audience to cheer me on.
After the ceremony was over, I was so relieved to get a message that Mom had done just fine and was in recovery. Her friends Lissa and Susan were waiting for her to come up to the floor, and Paul was en route to the hospital.
The good news is that her kidney continues to produce and drain some urine, the bad news is that it is not draining all the urine it should. Mom was born with two ureters on the left side, which is not normal, but has never posed a problem. A stent was successfully placed in one ureter, but the other seemed impenetrable. Tomorrow, she will have a catheter placed in her kidney through her back, that will hopefully access the fluid accumulation directly and provide some relief. This procedure will be done in interventional radiology, so she'll be awake with just local anesthetic.
I finally got to speak with mom this evening, and she seemed discouraged and proud all at the same time. I reassured her that she missed nothing but some cheesy nursing humor, but I can empathize when she shared with me that today she thought, "Well, is this it?" This is not it, however, because based on the love and support she's received from friends and family, I know if she ever needs a transplant, she'll probably end up with THREE kidneys, and a few in the freezer, just in case. But that's no where in the near future...hopefully this catheter does the trick.
So a special thank you to Marilyn and Alan for providing mom with cozy bed linens in which to snuggle tonight, to Lissa and Susan for your hours of support and prompt updates, to Coco and Tom for representing my family like true champs, and Filomena for helping Mom pull off the grad gift of a lifetime! I was SHOCKED! For those of you out of the loop, Mom had Tom and Filomena communicate to make sure I received my long-admired diamonds by the yard necklace this evening. The necklace itself is not nearly as special as all the teamwork and thought I know went in to getting it to me.
And no Dad...I did not need to be carried off the stage in tears like I did in my kindergarten piano rehearsal, but thanks for bringing that up...again...
After the ceremony was over, I was so relieved to get a message that Mom had done just fine and was in recovery. Her friends Lissa and Susan were waiting for her to come up to the floor, and Paul was en route to the hospital.
The good news is that her kidney continues to produce and drain some urine, the bad news is that it is not draining all the urine it should. Mom was born with two ureters on the left side, which is not normal, but has never posed a problem. A stent was successfully placed in one ureter, but the other seemed impenetrable. Tomorrow, she will have a catheter placed in her kidney through her back, that will hopefully access the fluid accumulation directly and provide some relief. This procedure will be done in interventional radiology, so she'll be awake with just local anesthetic.
I finally got to speak with mom this evening, and she seemed discouraged and proud all at the same time. I reassured her that she missed nothing but some cheesy nursing humor, but I can empathize when she shared with me that today she thought, "Well, is this it?" This is not it, however, because based on the love and support she's received from friends and family, I know if she ever needs a transplant, she'll probably end up with THREE kidneys, and a few in the freezer, just in case. But that's no where in the near future...hopefully this catheter does the trick.
So a special thank you to Marilyn and Alan for providing mom with cozy bed linens in which to snuggle tonight, to Lissa and Susan for your hours of support and prompt updates, to Coco and Tom for representing my family like true champs, and Filomena for helping Mom pull off the grad gift of a lifetime! I was SHOCKED! For those of you out of the loop, Mom had Tom and Filomena communicate to make sure I received my long-admired diamonds by the yard necklace this evening. The necklace itself is not nearly as special as all the teamwork and thought I know went in to getting it to me.
And no Dad...I did not need to be carried off the stage in tears like I did in my kindergarten piano rehearsal, but thanks for bringing that up...again...
Waiting Game
Spoke with Mom's nurse this morning, who said she did okay over night, but still struggles with pain and nausea. She has another catheter in so they can monitor her urine output closely, which has been very good. The creatinine value is not back from the lab, but they're hoping it's improved today.
Mom's up and about, just waiting for Dr. G to come by and make a plan!
Mom's up and about, just waiting for Dr. G to come by and make a plan!
Thursday, December 13, 2007
Never a Dull Moment
Connecticut has been completely slammed with snow-over an inch and hour for twelve hours. Very impressive for the first real snow fall, and really lovely to watch from your snugly couch in front of a Christmas tree. Not so pleasant, however, when one needs to go to the hospital via ambulance! Oh yes...Mom took a spin to John Dempsey/UCONN Medical Center this evening.
That left flank pain I reported about earlier got so severe that mom could barely breathe. She called the doctor on call, she took her temperature and blood pressure, and then called 911. Poor thing though she was going to meet her maker going over Talcott Mountain in a blizzard, she was in so much pain. The ER staff was amazing and got her well medicated quickly, took urine and blood samples, and did a CT scan of her abdomen.
Her urine values were a bit concerning, particularly the elevated creatinine, which is a good indicator of kidney function. The CT scan showed that she has hydronephrosis and hydroureter, or "water on the kidney and ureter." She also has a bit of fluid around the surgical scar on the abdominal wall. Unfortunately they were unable to use contrast dye in the CT scan because of her elevated creatinine, because had her kidney really been stressed or obstructed, she wouldn't have been able to excrete the dye causing a whole new list of problems.
Lucky for my mom, her surgeon, "Dr. Gureter" splits his time at St. Frannie and UCONN. He was on his way out when he got the call that my mom was arriving, and turned right around. If I ever see this man again, he's getting such a massive bear hug he might need to see a chiropractor after.
The good news is that her pain is well controlled, and she is putting out plenty of urine, so she doesn't have an obstruction. They theory is that these are complications related to her surgery, and not organic issues in the left kidney (THANK GOODNESS). She'll be admitted for observation until tomorrow night, and then they'll make a decision at that point, based on what repeat CT scans with contrast dye indicate (assuming they get her creatinine under control by then).
So once again, mom proves that the lime light is all hers, but I wouldn't have it any other way!
That left flank pain I reported about earlier got so severe that mom could barely breathe. She called the doctor on call, she took her temperature and blood pressure, and then called 911. Poor thing though she was going to meet her maker going over Talcott Mountain in a blizzard, she was in so much pain. The ER staff was amazing and got her well medicated quickly, took urine and blood samples, and did a CT scan of her abdomen.
Her urine values were a bit concerning, particularly the elevated creatinine, which is a good indicator of kidney function. The CT scan showed that she has hydronephrosis and hydroureter, or "water on the kidney and ureter." She also has a bit of fluid around the surgical scar on the abdominal wall. Unfortunately they were unable to use contrast dye in the CT scan because of her elevated creatinine, because had her kidney really been stressed or obstructed, she wouldn't have been able to excrete the dye causing a whole new list of problems.
Lucky for my mom, her surgeon, "Dr. Gureter" splits his time at St. Frannie and UCONN. He was on his way out when he got the call that my mom was arriving, and turned right around. If I ever see this man again, he's getting such a massive bear hug he might need to see a chiropractor after.
The good news is that her pain is well controlled, and she is putting out plenty of urine, so she doesn't have an obstruction. They theory is that these are complications related to her surgery, and not organic issues in the left kidney (THANK GOODNESS). She'll be admitted for observation until tomorrow night, and then they'll make a decision at that point, based on what repeat CT scans with contrast dye indicate (assuming they get her creatinine under control by then).
So once again, mom proves that the lime light is all hers, but I wouldn't have it any other way!
Behave Yourself, Little Lefty!
Mom had her follow appointment with Dr. K this morning, and she was accompanied by our dear Susan Eastman. She had been experiencing some left-sided flank pain, which obviously has been very concerning since that's her lone kidney, but he seemed confident that this is a muscular thing and she needn't worry. They were in there just over a week ago and things looked perfect on that side of the abdomen.
He was concerned that pain continues to be such an issue, and encouraged her to drink and eat more. In fact, he told her now is the time to eat whatever you want, whenever you want. Talk about a good excuse to have brie cheese on a daily basis. Just to show my support, I might join her in that endeavor.
We're scheduling an appointment to meet with a new oncologist in the next week or two, hopefully when I'm home for the holidays, and Mom will follow up with Dr. K in three weeks.
Oh yes...and I miraculously passed my exams and tomorrow I get pinned. Mom can't be there, but Tom will be "that guy" in the front row with the video recorder so she can enjoy every bad nursing joke and puncture wound (I mean- who thought actually pinning us was a good idea?) for herself when I get home next week!
He was concerned that pain continues to be such an issue, and encouraged her to drink and eat more. In fact, he told her now is the time to eat whatever you want, whenever you want. Talk about a good excuse to have brie cheese on a daily basis. Just to show my support, I might join her in that endeavor.
We're scheduling an appointment to meet with a new oncologist in the next week or two, hopefully when I'm home for the holidays, and Mom will follow up with Dr. K in three weeks.
Oh yes...and I miraculously passed my exams and tomorrow I get pinned. Mom can't be there, but Tom will be "that guy" in the front row with the video recorder so she can enjoy every bad nursing joke and puncture wound (I mean- who thought actually pinning us was a good idea?) for herself when I get home next week!
Wednesday, December 12, 2007
Helping Hands
And those hands better be SQUEAKY CLEAN!
But I digress...
Mom's amazing friend Susan Eastman has stepped up to be our go-to gal, our point person, our seniora numero uno!
For all of those who have offered to help with appointments, cooking, errands, etc., we've had too much on our plates to really figure out how to put these wonderful offers to use- enter Susan.
If you want to contribute, please contact her via email at eastmans@raveisre.com with your contact information, and if there's any specific way you'd like to help out. When my mom needs something, she, I, or Didi will call Susan and she'll contact the group via email and see who's available.
On that note, after talking with mom today, she mentioned that she's gotten lots of "check in" and "offers to help" emails, but she's just not up to email, and would prefer people not email her right now at all. Her internet energy is used reading this blog, and NOTHING makes her happier than reading the comments. So even if it's just to say hi, post and let her know you're reading and thinking of her that way, instead of calling or emailing.
Thanks so much for every one's understanding and continued support!
But I digress...
Mom's amazing friend Susan Eastman has stepped up to be our go-to gal, our point person, our seniora numero uno!
For all of those who have offered to help with appointments, cooking, errands, etc., we've had too much on our plates to really figure out how to put these wonderful offers to use- enter Susan.
If you want to contribute, please contact her via email at eastmans@raveisre.com with your contact information, and if there's any specific way you'd like to help out. When my mom needs something, she, I, or Didi will call Susan and she'll contact the group via email and see who's available.
On that note, after talking with mom today, she mentioned that she's gotten lots of "check in" and "offers to help" emails, but she's just not up to email, and would prefer people not email her right now at all. Her internet energy is used reading this blog, and NOTHING makes her happier than reading the comments. So even if it's just to say hi, post and let her know you're reading and thinking of her that way, instead of calling or emailing.
Thanks so much for every one's understanding and continued support!
C- What?
C-Diff. Short for Clostridium Difficile. It is a bacteria found in the gastrointestinal (GI) tract of healthy and sick people alike, however if c-diff is given the opportunity to rise, it causes infection.
Symptoms include nausea, watery diarrhea, abdominal pain and/or tenderness, and loss of appetite. Hmm...sound familiar? And for those in the health care profession who have smelt it- you know it's hard to forget!
Mom was having all of these symptoms in the hospital, so they collected a sample before she left, and sure enough results came back positive this morning.
Because Mom was on broad spectrum antibiotics for a prolonged period of time, it decreased her immune function, allowing c-diff to grow and cause these symptoms.
The icky part of it is that it can also be transmitted through fecal-oral contact. Meaning someone who is infected (or a healthcare worker who touches an infected patient) may touch something without washing their hands, then comes along another immunocomprimised person or healthcare worker that exposes themselves or their patients.
It is very common in hospitals, and very rare outside of them. Moral of the story?
WASH YOUR HANDS!
Here's what the Center of Disease Control (CDC) Recommends:
1. Wet your hands with clean running water and apply soap. Use warm water if it is available.
2. Rub hands together to make a lather and scrub all surfaces.
3. Continue rubbing hands for 20 seconds. Need a timer? Imagine singing "Happy Birthday" twice.
4. Rinse hands well under running water
5. Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off the faucet.
http://www.cdc.gov/cleanhands/
For the rest of the day, just think about what you're touching, and who could have touched it before you. Brings whole new meaning to "eat shit," doesn't it?
Symptoms include nausea, watery diarrhea, abdominal pain and/or tenderness, and loss of appetite. Hmm...sound familiar? And for those in the health care profession who have smelt it- you know it's hard to forget!
Mom was having all of these symptoms in the hospital, so they collected a sample before she left, and sure enough results came back positive this morning.
Because Mom was on broad spectrum antibiotics for a prolonged period of time, it decreased her immune function, allowing c-diff to grow and cause these symptoms.
The icky part of it is that it can also be transmitted through fecal-oral contact. Meaning someone who is infected (or a healthcare worker who touches an infected patient) may touch something without washing their hands, then comes along another immunocomprimised person or healthcare worker that exposes themselves or their patients.
It is very common in hospitals, and very rare outside of them. Moral of the story?
WASH YOUR HANDS!
Here's what the Center of Disease Control (CDC) Recommends:
1. Wet your hands with clean running water and apply soap. Use warm water if it is available.
2. Rub hands together to make a lather and scrub all surfaces.
3. Continue rubbing hands for 20 seconds. Need a timer? Imagine singing "Happy Birthday" twice.
4. Rinse hands well under running water
5. Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off the faucet.
http://www.cdc.gov/cleanhands/
For the rest of the day, just think about what you're touching, and who could have touched it before you. Brings whole new meaning to "eat shit," doesn't it?
Going Great Lengths
.JPG)
Claire's posting got me thinking- I know so many generous girls, women, and even a few boys, who have donated their hair in the past. I myself hacked and sent off 13 inches just this past July.Quite a few people have written me saying they're making an effort to donate blood more often, but for you long-haired folk in need of an extreme make over, consider donating your hair before you get your new bob a-la Katie Holmes!
For more information, check out http://www.locksoflove.org/ and http://www.wigsforkids.org/
Tuesday, December 11, 2007
The Results Are In
The good news is that the lymph nodes are free and clear of any cancer matter, the bad news is that the borders around where they removed the ureter are not totally clean. In other words, when they remove tissue, they examine not only the tissue for cancer, but the borders of where the tissue was cut from. Mom's borders show evidence that some microscopic cancer cells are still in the fatty tissue around where the ureter was (I bet she's wishing she'd gotten liposuction while they were in there like we all told her to).
However the fact that this didn't travel to the lymph nodes, and that now the closest lymph nodes are out is a very good thing.
Dr. K is going to facilitate an appointment with an oncologist in 5-6 weeks once she is well healed. She will most likely need to have a few rounds of intravenous chemotherapy for what Dr. K calls, an "insurance policy." She is so young and can definitely beat this, so he said we will continue to go full steam ahead and act aggressively.
Mom asked, "am I going to lose my hair?" And the answer is probably, yes. So Trixie (cousin, hair-stylist, and cancer-ass-kicker), we'll be calling on your assistance for some post-holiday pre-chemo wig expertise!
So this isn't exactly what we wanted to hear, but not the worst case scenario either. Mom is understandably disappointed, but I just keep encouraging her to take it one day at a time, and just focus on resting and regaining strength so when it's time to start chemo, she's ready.
Otherwise Mom is still feeling quite tired and rests a lot, so keeping calls to the house at a minimum is appreciated. That's not to say people can't call to offer assistance or whatnot, but she's not quite up for visits or chats. Those will have to wait another week or two!
However the fact that this didn't travel to the lymph nodes, and that now the closest lymph nodes are out is a very good thing.
Dr. K is going to facilitate an appointment with an oncologist in 5-6 weeks once she is well healed. She will most likely need to have a few rounds of intravenous chemotherapy for what Dr. K calls, an "insurance policy." She is so young and can definitely beat this, so he said we will continue to go full steam ahead and act aggressively.
Mom asked, "am I going to lose my hair?" And the answer is probably, yes. So Trixie (cousin, hair-stylist, and cancer-ass-kicker), we'll be calling on your assistance for some post-holiday pre-chemo wig expertise!
So this isn't exactly what we wanted to hear, but not the worst case scenario either. Mom is understandably disappointed, but I just keep encouraging her to take it one day at a time, and just focus on resting and regaining strength so when it's time to start chemo, she's ready.
Otherwise Mom is still feeling quite tired and rests a lot, so keeping calls to the house at a minimum is appreciated. That's not to say people can't call to offer assistance or whatnot, but she's not quite up for visits or chats. Those will have to wait another week or two!
Monday, December 10, 2007
Home Sweet Home
Mom got home shortly after lunch, ate some chicken soup, and hopped right in to her hospital bed. Well, hopped is the wrong word, shuffled is more like it.
When I was home last week, Coco and I bought a massive tree which we decorated and put right in the living room so mom can enjoy it from the couch, where I assume she'll be spending most of her time in these coming weeks. I wish I could have seen her expression, but from the sounds of it she was very surprised.
Nurse Didi is there getting report from Nurse Coco, and will officially take over tomorrow.
I spoke with Dr. K today, and no pathology reports until tomorrow afternoon. Not that we haven't been holding our breath till our faces turn blue or anything! Geese...
Shout out: Lynn- Painter Extraordinaire- receives the award for the best brownies this side of the Mississippi! Thank you for the fruit salad and brownie delivery last week. I should have taken some back to Boston with me, but I know Coco, Paul, Thierry, and Julie enjoyed them as well. So delicious, so thoughtful.
When I was home last week, Coco and I bought a massive tree which we decorated and put right in the living room so mom can enjoy it from the couch, where I assume she'll be spending most of her time in these coming weeks. I wish I could have seen her expression, but from the sounds of it she was very surprised.
Nurse Didi is there getting report from Nurse Coco, and will officially take over tomorrow.
I spoke with Dr. K today, and no pathology reports until tomorrow afternoon. Not that we haven't been holding our breath till our faces turn blue or anything! Geese...
Shout out: Lynn- Painter Extraordinaire- receives the award for the best brownies this side of the Mississippi! Thank you for the fruit salad and brownie delivery last week. I should have taken some back to Boston with me, but I know Coco, Paul, Thierry, and Julie enjoyed them as well. So delicious, so thoughtful.
My Dad is a Gastrointerologist?
Dad's comment to the last posting said something like "December 19th will take care of all of this." December 19th is the day I'm driving up to White River Junction to pick up my sister who will have taken the bus from Montreal, and then we're off on a secret mission given by my father. So when he says all of this will be taken care of then, I only assume he means to surprise us with the Nobel Peace Prize for curing post-operative diarrhea and nausea? Hmmm...
Talked with Mom and Coco this morning. Her JP drain from her abdomen was removed, which had been placed to drain excess fluids from surgery. Without the drain, one runs the risk of serious abdominal distention, discomfort, and peritonitis (infection- not fun).
She walked to the shower herself yesterday, took a shower, but had to get a ride back to the room. Just when she's feeling up to something, and big fat reality check sets in.
The plan is to discharge her home after lunch today. She'll have to keep the foley catheter in for some time, which will continue to rest the bladder, but still causes a few bladder spasms here and there. Follow-up is later in the week, and Dr. K will do a few tests to check on how the system is healing and how her left kidney is holding up. If her kidneys are anything like my cats, the left will be totally psyched that the other one bit the dust and now has the entire place to herself. I just hope Sammy that Cat and Righty the Kidney are having a ball somewhere together now.
Once mom's home and settled, I'll let everyone one. Now go knock on wood because I don't want to jinx her discharge plan!
Talked with Mom and Coco this morning. Her JP drain from her abdomen was removed, which had been placed to drain excess fluids from surgery. Without the drain, one runs the risk of serious abdominal distention, discomfort, and peritonitis (infection- not fun).
She walked to the shower herself yesterday, took a shower, but had to get a ride back to the room. Just when she's feeling up to something, and big fat reality check sets in.
The plan is to discharge her home after lunch today. She'll have to keep the foley catheter in for some time, which will continue to rest the bladder, but still causes a few bladder spasms here and there. Follow-up is later in the week, and Dr. K will do a few tests to check on how the system is healing and how her left kidney is holding up. If her kidneys are anything like my cats, the left will be totally psyched that the other one bit the dust and now has the entire place to herself. I just hope Sammy that Cat and Righty the Kidney are having a ball somewhere together now.
Once mom's home and settled, I'll let everyone one. Now go knock on wood because I don't want to jinx her discharge plan!
Sunday, December 9, 2007
Two Steps Forward, Two Steps Back
You girls who grew up in the '80s probably have Paula Abdul's "Opposites Attract" in your head now, but I'm not talking a top 40 hit of our childhood, I'm talking about my mom's daily routine.
Sorry I haven't blogged since Friday morning- since returning to Boston I've been in constant contact with Mom and Coco, but haven't had the chance to write.
She's still in the hospital despite her discharge goal of this morning. Her nausea and dizziness continues to be a HUGE problem, so much so that she's been unable to eat anything of substance. She's vomited a few times, and has persistent diarrhea, which has made her team think that perhaps she has a bowel obstruction. Obstructions can be deceiving, because a patient can have diarrhea because nothing formed is able to move around the obstruction, and yet one might assume all is well because the bowels appear to be moving.
There is also some concern that she may be having an allergic reaction of sorts to her medications because no medications seem to be reducing the nausea. I don't really buy this theory, since she's on a pill form of Dilaudid, which is what was in her PCA for 24 hours, during which she had no nausea. In my book, the problems began when they removed her Scopolamine patch 72 hour after surgery. But who am I? Tomorrow I plan to talk to Dr. K and do some brain-storming. That's the tough thing about weekends...patients are passed off to a team who doesn't know the subtle nuances of the case the way their primary does.
Mom is frustrated, primarily because she had this idea that she would bounce back much sooner than she has. We keep trying to remind her that this will be a slower recovery, and the "do-er" in her needs to just get used to the idea that she will have to lay low for a very, very, long time.
Coco has been absolutely top notch, and even scored herself a visitor suite at the hospital so she can be near Mom. Their brother Thierry and his wife Julie stopped by for a surprise visit as well- just in time to pass her a bucket- but she really loved seeing their faces, none the less.
Tante Didi (Mom's Aunt) arrives tomorrow relieve Coco and take over for as long as she's needed. I don't know what we would do without family- I won't even entertain the thought!
For those who've called to offer rides, meals, visits, respit, etc. please know your offers will be kept in mind. We won't hesitate to ask for help when the time comes.
Hugs to everyone out there reading!
Sorry I haven't blogged since Friday morning- since returning to Boston I've been in constant contact with Mom and Coco, but haven't had the chance to write.
She's still in the hospital despite her discharge goal of this morning. Her nausea and dizziness continues to be a HUGE problem, so much so that she's been unable to eat anything of substance. She's vomited a few times, and has persistent diarrhea, which has made her team think that perhaps she has a bowel obstruction. Obstructions can be deceiving, because a patient can have diarrhea because nothing formed is able to move around the obstruction, and yet one might assume all is well because the bowels appear to be moving.
There is also some concern that she may be having an allergic reaction of sorts to her medications because no medications seem to be reducing the nausea. I don't really buy this theory, since she's on a pill form of Dilaudid, which is what was in her PCA for 24 hours, during which she had no nausea. In my book, the problems began when they removed her Scopolamine patch 72 hour after surgery. But who am I? Tomorrow I plan to talk to Dr. K and do some brain-storming. That's the tough thing about weekends...patients are passed off to a team who doesn't know the subtle nuances of the case the way their primary does.
Mom is frustrated, primarily because she had this idea that she would bounce back much sooner than she has. We keep trying to remind her that this will be a slower recovery, and the "do-er" in her needs to just get used to the idea that she will have to lay low for a very, very, long time.
Coco has been absolutely top notch, and even scored herself a visitor suite at the hospital so she can be near Mom. Their brother Thierry and his wife Julie stopped by for a surprise visit as well- just in time to pass her a bucket- but she really loved seeing their faces, none the less.
Tante Didi (Mom's Aunt) arrives tomorrow relieve Coco and take over for as long as she's needed. I don't know what we would do without family- I won't even entertain the thought!
For those who've called to offer rides, meals, visits, respit, etc. please know your offers will be kept in mind. We won't hesitate to ask for help when the time comes.
Hugs to everyone out there reading!
Friday, December 7, 2007
Houston, We Have Lift Off!
ZEE GAS HAS BEEN PASSED! Sit down with a cup of joe....this is a long one.
Mom's fart was born at 4:20 this morning, less than one ounce, not very long, and with her eyes. It was beautiful.
Not that that was the highlight of her night or anything. Since she arrived to the floor, she's had the most lovely roommate named Mary Ann. I never thought to tell mom how good she had it, but boy did she. This woman was nice, quiet, had a lovely family, wore adorable bathrobes, made for nice conversation, etc. Then she was discharged yesterday afternoon and Mom's new roommate arrived- what we nurses call a "Friday Night Special." Who knows if she was post-op and hallucinating, coming down from some serious nose sugar, or just liked the sauce a LOT, but she was no fun as a roommate. She was chanting, crying, complaining of back pain- and that divider curtain doesn't do much for sound control. Then she pissed the bed. Then she shit the bed. And that divider curtain doesn't do much for smell control either.
Speaking from experience, sometimes a room change isn't an option. When you're in a hospital, you run the risk of having a bad roommate, and it's not a hotel so you just have to deal with it. Mom has really taken my lectures on self-advocacy to heart and advocated her little self out of that room STAT.
Pain continued to be an issue, and she says that when she uses her nurse call light, sometimes people don't come, or don't come quickly enough. It's hard to tell, because she drifts in and out of sleep so easily that less time might pass than she thinks, or maybe they came by and she was asleep so assumed all was well.
This morning her catheter was filled with clots, and so urine takes the path of least resistance, and went around the catheter. I guess what goes around comes around, cause she pissed the bed too.
*Disclaimer: Mom, you can't be mad at me for sharing all these details because this is meant to be informative and a learning tool because chances are someone else might have to go through something similar and it's important to know the ins and outs of recovery.*
As you can imagine, she didn't care for that too much. She called the house this morning and told Coco to let me sleep, but Coco ripped out of the driveway like a bat out of hell and I woke up. So I just called the floor, laid in to the nurse as only we nurses can, and made sure the situation is all set. She was very nice, informed me that the catheter had been irrigated and is working just fine, that mom received a real breakfast tray this morning, and is ON THE JOHN! WOO HOO!
I can't even being to express what an exciting thing this is- analgesia, narcotics, immobility, surgery, all these things are HUGELY constipating, especially when put together. This is by far, the number one biggest accomplishment post-operatively. Who knows how things developed, but even the urge is an excellent sign.
*Mom: See disclaimer above.*
The take home message is that if you are ever going in for day surgery where you will be sedated, pop a Colace daily two days before, and keep it up in the days after to make sure things keep moving. It's a stool softener, and constipation is one of the most painful things someone can experience post-operatively.
So today is off to an exciting start, and I'm sure she'll need to rest rest rest for the better part of the day. I will see her one more time on my way back to Boston. You see, I have exams all next week, and graduation Friday, so I have to get back to an environment where I'll actually get some work done. Originally, we'd thought mom would be out Wednesday or Thursday, so I'd be able to help her at home, but her A Team captain Coco will be here all weekend, and then teammate and mom's aunt Didi will be here till I return after graduation.
I'll continue to get updates from them and blog away thought :)
Mom's fart was born at 4:20 this morning, less than one ounce, not very long, and with her eyes. It was beautiful.
Not that that was the highlight of her night or anything. Since she arrived to the floor, she's had the most lovely roommate named Mary Ann. I never thought to tell mom how good she had it, but boy did she. This woman was nice, quiet, had a lovely family, wore adorable bathrobes, made for nice conversation, etc. Then she was discharged yesterday afternoon and Mom's new roommate arrived- what we nurses call a "Friday Night Special." Who knows if she was post-op and hallucinating, coming down from some serious nose sugar, or just liked the sauce a LOT, but she was no fun as a roommate. She was chanting, crying, complaining of back pain- and that divider curtain doesn't do much for sound control. Then she pissed the bed. Then she shit the bed. And that divider curtain doesn't do much for smell control either.
Speaking from experience, sometimes a room change isn't an option. When you're in a hospital, you run the risk of having a bad roommate, and it's not a hotel so you just have to deal with it. Mom has really taken my lectures on self-advocacy to heart and advocated her little self out of that room STAT.
Pain continued to be an issue, and she says that when she uses her nurse call light, sometimes people don't come, or don't come quickly enough. It's hard to tell, because she drifts in and out of sleep so easily that less time might pass than she thinks, or maybe they came by and she was asleep so assumed all was well.
This morning her catheter was filled with clots, and so urine takes the path of least resistance, and went around the catheter. I guess what goes around comes around, cause she pissed the bed too.
*Disclaimer: Mom, you can't be mad at me for sharing all these details because this is meant to be informative and a learning tool because chances are someone else might have to go through something similar and it's important to know the ins and outs of recovery.*
As you can imagine, she didn't care for that too much. She called the house this morning and told Coco to let me sleep, but Coco ripped out of the driveway like a bat out of hell and I woke up. So I just called the floor, laid in to the nurse as only we nurses can, and made sure the situation is all set. She was very nice, informed me that the catheter had been irrigated and is working just fine, that mom received a real breakfast tray this morning, and is ON THE JOHN! WOO HOO!
I can't even being to express what an exciting thing this is- analgesia, narcotics, immobility, surgery, all these things are HUGELY constipating, especially when put together. This is by far, the number one biggest accomplishment post-operatively. Who knows how things developed, but even the urge is an excellent sign.
*Mom: See disclaimer above.*
The take home message is that if you are ever going in for day surgery where you will be sedated, pop a Colace daily two days before, and keep it up in the days after to make sure things keep moving. It's a stool softener, and constipation is one of the most painful things someone can experience post-operatively.
So today is off to an exciting start, and I'm sure she'll need to rest rest rest for the better part of the day. I will see her one more time on my way back to Boston. You see, I have exams all next week, and graduation Friday, so I have to get back to an environment where I'll actually get some work done. Originally, we'd thought mom would be out Wednesday or Thursday, so I'd be able to help her at home, but her A Team captain Coco will be here all weekend, and then teammate and mom's aunt Didi will be here till I return after graduation.
I'll continue to get updates from them and blog away thought :)
Thursday, December 6, 2007
Day 3 Sans Kidney
Mom called at 6am to say she'd slept well, just not enough, and that her surgeon had already come by to visit and said she is right on track. When I arrived later in the morning, she was very uncomfortable, and not nearly as chipper as she was on the phone. A little nap, some percocet, and we got up to go for a walk and she even took a...drum roll please...SHOWER! I think that was the best medicine of all.
Every day she takes five steps forward then three steps back. It's hard to remember how intense and invasive her surgery was, and that it's not just a scar on the outside the needs to heal.
They're hoping that she can be discharged home Saturday, but it might be Sunday. She needs to have passed gas and eaten a full meal before she can come home, and even then she'll need to take it seriously easy for many many weeks. So all you who've offered to help, don't worry, your time will come!
Every day she takes five steps forward then three steps back. It's hard to remember how intense and invasive her surgery was, and that it's not just a scar on the outside the needs to heal.
They're hoping that she can be discharged home Saturday, but it might be Sunday. She needs to have passed gas and eaten a full meal before she can come home, and even then she'll need to take it seriously easy for many many weeks. So all you who've offered to help, don't worry, your time will come!
Wednesday, December 5, 2007
End of Day 2 Sans Kidney
Mom is much improved this evening! She went for a walk, took in some good fluids by mouth, and is tolerating her new pain med regime very well. I really think her shortness of breath this morning was because her pain was poorly managed over night. Tense up all your abdominal muscles as best you can, then try to take a deep breath. Impossible, right? That's what she's been battling, and it's scary!
Before I left this evening, I made sure to communicate with the nurse that Mom needs to get her pain pills every four hours, even if she's asleep and doesn't wake up in time to ask for them.
I'll be up super early to make sure I get to see the doctors round in the morning, and will post in the afternoon.
But before I turn in for the night, I'll leave you with these words of encouragement from Mom's youngest sister Stephanie...
"Come on already, Babette! Be a Guerlain and fart the big one! Stink up the whole ICU! Remember, the more you fart, the better you feel!!"
Potty talk never gets old.
Before I left this evening, I made sure to communicate with the nurse that Mom needs to get her pain pills every four hours, even if she's asleep and doesn't wake up in time to ask for them.
I'll be up super early to make sure I get to see the doctors round in the morning, and will post in the afternoon.
But before I turn in for the night, I'll leave you with these words of encouragement from Mom's youngest sister Stephanie...
"Come on already, Babette! Be a Guerlain and fart the big one! Stink up the whole ICU! Remember, the more you fart, the better you feel!!"
Potty talk never gets old.
The High Price of Gas
And I'm not talking about the kind you import from the middle east...
Poor Mom did not pass zee gas last night, which means she still cannot eat, however she has been able to start on clear liquids today. She's enjoyed water, some cranberry juice, and chicken broth, but is hesitant to overdue it because her stomach is a bit queasy at times.
When we spoke first thing this morning, she was complaining of not being able to take a deep breath, which in turn made her even more anxious and less able to calm down and steady her breathing. Her surgical team assessed her, sent her for a chest x-ray, and assured her that this would go away within 24 hours. Again, this is a product of the air they inflated her abdomen with, and the manipulation of abdominal organs. This makes you uncomfortable and can even press against your diaphragm, inhibiting total lung expansion.
My main concern was that she had an infection, which can brew inside the lung, take up valuable surface area in which air exchange occurs, and therefor cause ineffective breathing. Or that she has a collapsed or partially collapsed lung, which can happen a number of way after or during surgery. I don't really care what anyone thinks of me, so I marched my booty in there with my orange monogrammed stethoscope (thank you, Tommy), and assessed her myself. Her lung sound were good, but faint (meaning no collapsed anything), and her chest x-ray was negative (meaning no infection). Her vital signs are good, her blood pressure is back to where it was pre-op, her color is better, and once she was up in the chair having some juice, she was feeling so much better.
Her PCA has been discontinued, and she is now on pain meds as needed. It is a lot harder to reduce existing pain than it is to prevent it to begin with, so I made her a chart to remind her to ask for pain meds every four hours no matter what. So the narcotics make her a little loopy- so what? She kept falling asleep while talking to my dad, and would start mumbling about how Chevas Road takes you to the dump...very amusing stuff. It's so hard not to laugh at my mom/Jimmy Hendrix, but I try! The dizziness and loopiness should subside as the IV narcotics wear off.
She's asked that people not call still, because she needs to conserve her energy and takes cat naps as often as she can.
Over all, she's doing well. No transfusion today, the left kidney seems to be working well, and aside from the pain, loopiness, and shortness of breath, things seem right on course.
Tuesday, December 4, 2007
Pain Pain Go Away
Just back from our evening visit, and mom was just finishing her blood transfusion. Her blood pressure is still lower than her baseline, but her oxygen saturation is holding well above 90%, and her color was much better. The biggest improvement I noticed was that she was moving without thinking about it; shifting in bed, reaching for things on her bedside table, and not being so careful and protective as she was this morning.
Pain still seems to be the biggest issue however. Her PCA (Patient Controlled Analgesic) delivers a basal, or steady state, of narcotic, and then she's able to give herself an additional dose as often as every 10 minutes. Unfortunately, if she forgets to push the little button or falls asleep, the pain catches up with her.
Her team came in to check on her several times, and agreed that it will take a few days for her pain to go away because of how much manipulation happens inside the abdominal cavity during surgery.
Otherwise, she's being such a super trooper! Still no drinking until she faaaaats (as we say in Boston), so cross your fingers for her tonight so that she can stop having to sneak drinks by sucking on the toothettes.
Who would have thunk I'd be asking people to rally for gas?
Howard the Horrible
How could I forget! I met with the ambulatory day surgery nurse manager (where mom usually recovers from her surgeries) and the PACU (post-anesthetic care unit) nurse manager to discuss mom's treatment, or lack there of, yesterday evening. I started by assuring them that all the care she's received thus far has been top notch, which is completely true- but then I let it rip.
1. He was completely inattentive to her needs.
2. When she asked for something, he not only didn't do it, he made her feel guilty for asking.
3. So guilty that she cried (OH NO YOU DIDN'T!).
4. He didn't assess her pain on the pain scale, even once.
5. She persisted in asking for toothettes because her mouth was so dry, and he brought her a glass of water!!!!! (see 6)
6. He put her at risk for aspiration and choking by providing her water when she clearly had orders for nothing by mouth for these reasons exactly.
7. When she asked for warm blankets, he said, "If you'd stop interrupting me, I could get my paperwork done and we could both get out of here."
The nurse managers were wonderful, took notes, apologized, thanked me for the feedback, and reassured me that it would be taken care of. They'll hopefully follow up with us tomorrow.
Apparently Howard is new to the unit, but I mean- is he new to planet Earth? Come on now...
Knock on Wood
In my post about donating blood, I said the chances of Mom needing a transfusion were slim to none, and I spoke too soon. I learned today that she had two units of blood transfused during surgery somewhere around the 5.5 hour mark when they realized the ureter removal would have to be done via open abdominal surgery rather than laproscopically. Today, her blood pressure continues to be low (80s/40s), her oxygen saturation is low, her hematocrit and hemoglobin are low, and her color isn't great, so she's getting another transfusion as we speak and tolerating it just fine. All these things are very closely related to one another, so another unit of blood and she should be all set and feeling a bit perkier.
She was up in the chair for a few hours, transferred to and from the chair like a champ. She's been doing very well with the incentive spirometer, and can sit up comfortably at 45 degrees in bed. But alas, no drinks till she passes the gases! We've got to make sure those bowels are moving before putting anything else in there. Her urine output is good, her surgical sites are very tidy, and her spirits are excellent. She has a little drain coming out of her abdomen to allow for extraneous fluids to come out, but it's draining very little, which indicates that she's not bleeding internally and doesn't have a ton of "stuff" in there that shouldn't be.
She naps a lot still, so no phone calls yet. Hope you all understand. I've been delivering cards and good wishes from the blog and from those who've called me, which she looks so forward to.
This recovery will be very slow-going, so especially when she's feeling mentally back to speed, but isn't physically, she'll look extra forward to chats and visits!
Coco and I are back to the hospital in a bit. Just wanted to take the dog out for a walk and get some food.
Thanks for the good vibes! She's using every last drip of them.
Day 1 Sans Kidney
As of midnight, mom still hadn't arrived to the floor, so we went to bed and resolved just to see her in the morning, but she gave me a little ring at 1:15 am. Apparently, some nurse named Howard in the recovery room just bought himself a one-way ticket, issued by me, out of St. Francis Hospital FOREVA! He made my mom's record 6 hours in recovery miserable with knocks like, "Sure I'll put the head of the bed up a bit, when I'm not so busy," and "if you'd stop interrupting me, I could finish your paper work and we could get out of here." All the lady needs to be happy post-op, are some toothettes (little sticks with minty sponges at the end) and blankets from the heater. Too much to ask? I think not! So Howard's nurse manager will see my shining face, and Howard will just have a big fat shiner on his.
Mom just called again just as Coco and I were about to hit the road. Her pain is the biggest barrier right now. Dr. K came in to visit and said she'll be able to have something to drink as soon as she's able to sit up-right, which is very uncomfortable.
Post-Op 101: Patients who have been heavily sedated with anesthesia and continue to be sedated with narcotics are at HUGE risk for aspiration of anything they eat or drink in to their lungs which could brew in to a nice fat pneumonia. Not until mom can sit up and is safe to drink will she be able to. Today we'll work on deep breathing, coughing, moving in bed as much as she can tolerate, and using this nifty gadget called the incentive spirometer. It's a little chamber with three balls, and by putting your mouth around the connected tube and taking a deep breath in, the balls rise. She should be encouraged to do this 10 times an hour to increase her lung capacity and get her back on track faster.
Want to hit the road, but today's missions will be:
1. Kick Howard's sorry ass.
2. Get Mom's pain under control.
3. Bury Howard's sorry ass.
4. Work on deep breathing and coughing exercises so she can advance to clear liquids this afternoon.
5. Wait, before I bury Howard's sorry ass, I'm going to feed it to my dad's new nanny goats, then bury it.
6. Get myself some of that DELICIOUS mac & cheese they serve at Au Bon Pain in the hospital lobby.
Best get to it.
Monday, December 3, 2007
New England Patriots Remain Undefeated, So Does Mom
Title courtesy of my aunt Coco. You see, we've been forced to self-medicate with Skinny Cow ice cream sandwiches while watching a stressful Pats game, awaiting the phone call from Mom's floor nurse to tell us she's finally out of recovery and settled in her room. Run on? Who cares- I'm pooped.
Mom's recovering well, which I'm assuming only because they've assigned her a room on a floor, although she still hasn't arrived there. I'm unable to communicate with anyone in recovery (can you say, annoying?), but her floor nurse said she's awaiting her arrival any moment. She'll give me a ring to let me know how things are going once Mom is comfortably situated. I said, "Look, I know that legally, you're not supposed to tell me anything, but I make mean cookies and I'm not afraid to bribe you if my mom is too sleepy to give you permission to communicate with me."
I'll post again tomorrow once I've seen Mom with my own two eyes, providing nothing happens between now and then... knock on wood!
Oh yeah- Tom Brady just called- he dedicated this victory to mom :) What a guy!
And We're Out
Sorry sorry sorry for the delay, but I JUST heard from the surgeons- blame it on the ureter! It was so heavily implanted in the surrounding musculature that it was a "painstakingly slow" process to remove it without damaging surrounding tissues and vasculature (arteries & veins), according to Dr. K. The kidney, section of the bladder, and lymph nodes came out without problem, it was just the ureter that was giving her problems. She was probably under anesthesia for about 10 hours. YIKES! But she handled it very well, and should be brought up to her room on the floor after a few hours in the recovery room. I don't know if Claude and I will be able to sneak a visit this evening once she's awake, but you better believe we'll be there first thing tomorrow morning!
Everything looked good to the naked eye, but we won't have the pathology reports back till next Monday.
Recovery might be a bit slower than they expected because of the intricacy required to detach the ureter, and she may be in the hospital till Friday even, but we'll have a better sense of that in the days to come.
If people can avoid calling her room at St. Francis until further notice, it would be greatly appreciated. Once she's got a bit more energy to spare and gives me the okay to accept phone calls, I will certainly let everyone know how to contact her.
Tonight and tomorrow will be particularly long for her, so keep the good thoughts and prayers a-comin'!
As soon as I hear something, you'll all be the first to know!
And We're In
Mom, her sister Claude, and myself hit the icy roads at 5:30am for our voyage to St. Francis. Yesterday Mom was hugely productive (surprise, surprise), organizing, making lists, giving us errands to run, etc. We capped the night with a cup of tea before and went to bed around 11pm. She didn't sleep great, but who would? A bit teary in the pre-op holding area, she was confident and so ready to get this over with! When asked to sign the right side of her stomach (part of the make-sure-the-right-organ-from-the-right-side-is-removed initiative), she wrote "Good-bye! -ET" with a heart around it, then from her belly button, made a dashed line that said "cut here." She also renamed her doctors Dr. Kidney (Dr. Kennedy) and Dr. Gureter (Dr. Girtsen), who, for urologists, have an impressive sense of humor.
The boarding school student in me appreciated that they showed up in coats and ties this morning too :)
Surgery should be 5-6 hours, with up to another 4 hours in the recovery area. As soon as "Dr. Kidney" calls me, I'll post again!
Subscribe to:
Posts (Atom)
4.jpg)
.jpg)
+Babette+School+Picture.jpg)
Posts
